Time to save clinical research?

Clinical trials are the driving force behind developing new medicines and methods of care. However, more than one-third fail to meet their enrollment goals for participant recruitment. In fact, more than 10% do not even recruit a single patient1.

This was the theme behind the third annual Clinical Trials Awareness Week (CTAW) which took place May 1–5. Spearheaded by the Coalition for Clinical Trials Awareness (CCTA), the week featured several events designed to raise awareness about clinical trials and how to better engage patients, physicians and policymakers.

The role of social media

The first event occurred on May 2 in the form of a Twitter chat. A total of 143 Twitter users, including patient advocacy groups, nonprofit organizations and the general public, took part in the chat. The focus of the discussion was “Can digital media save clinical trials?”

In total, the event generated high engagement with 1,411 tweets and 5,491,370 impressions worldwide. Most importantly, it highlighted the many ways in which social media could encourage greater trial participation. This included educating patients on the realities of clinical trial participation, as well as activating diverse populations to take part in medical research and supporting patients throughout the clinical trial enterprise.

How can government improve awareness?

The second of the week’s events took place on May 3. This time a policy roundtable discussing the federal government’s role in raising awareness of trials.

Panel members included David Charles, M.D., Chairman of the Alliance for Patient Access; Sara Chang, Director of Policy & Advocacy at Research!America; Jonca Bull, M.D., Assistant Commissioner at the Food and Drug Administration Office of Minority Health; and Renata Louwers, patient advocate and clinical trials writer.

The thought-provoking session came to several conclusions on how the government could help in trial enrollment. One recommendation was supporting patients in navigating the clinical trials enterprise by providing easier access to information they can grasp. Another recommendation was an expert “navigator” to help people through the process of finding a clinical trial. Also, physicians should be empowered to communicate clinical trials information to patients and help them find the right study. As Dr. Bull explained, “It’s so critical that the patient’s clinician is part of the process of finding the right clinical trial. A trusted physician can go a long way in increasing a patient’s willingness to participate in a study.”

In addition, the panel believe that clinical trials should be framed as a way to benefit society. This should be alongside a campaign to elevate public awareness and ensure the issue is front of mind for patients. Dr. Bull explained, “We want to improve opportunities for access to research.”

To conclude the discussion, Congresswoman Diana DeGette, a health policy expert and sponsor of the 21st Century Cures Act, spoke to attendees about the importance of raising clinical trial awareness. She noted, “If you are going to modernize and update the way we do biomedical research in this country, we have to include clinical trials.”

Creating an awareness taskforce

The final big event of the week came in the form of a letter sent to the Senate Committee of Health, Education, Labor and Pensions and the House Committee on Energy and Commerce.

Developed by the CCTA, the letter regarded the reauthorization process for the Prescription Drug User Fee Agreement (PDUFA).

The core concept is creating an interagency task force to pull together a road map based on the task force’s findings. Also, an information campaign designed to raise awareness of clinical trials and support the participation and willingness of patients to enroll.

To find out more about this year’s Clinical Trials Awareness Week, search #CTAW2017 on social media or visit www.CCTAwareness.org.

Astellas Patient Advocacy is a function within Corporate Affairs at Astellas that focuses on creating, building and maintaining third-party relationships. We serve as a conduit between Astellas and external stakeholders to help improve patient outcomes, improve access issues and address patients’ unmet needs head on.